It has been 5 years since the summer of our daughter's 80-day life. Before that summer, my husband and I had lived a life that was just about perfect by most peoples' standards. I had married my high school sweetheart and our life together was better than we ever could have dreamed. We enjoyed excellent health. We were financially comfortable. We had five great kids at home who excelled in school and sports.

We were thrilled when we found out that we were expecting again. The joy turned to devastation, however, when prenatal screening revealed our little girl had a condition called trisomy 13. The doctors told us that most of these babies die soon after birth and the few that live longer are severely disabled. With that news, we came to a fork in the road. The choice we faced would shape our lives, one way or another. Somehow, we found the courage to follow our hearts.

My background as an automotive engineer and financial analyst directed me to consider a rational solution. This pregnancy suddenly seemed like a car on an assembly line when it is discovered to have a seriously flawed foundation. It cannot be fixed and thus logic and fiscal responsibility demand the car be removed from the line immediately and scrapped. The doctors seemed to think about the problem the same way and advised me to terminate the pregnancy.Despite this advice, and the knowledge that it was what "everyone did" in this circumstance, I simply could not do it. My obstetrician asked, "What is the point of going on with the pregnancy when you know that the baby is going to die?" I was unable to formulate a coherent response. Now I can. From the moment I knew of my baby's existence, I loved her unconditionally. We would take her journey together, as a family. We named our daughter Annie.

We made plans for the impending death of our child not yet born. We learned about DNR orders and palliative care. We talked about whether to choose comfort care only for Annie. We absolutely didn't want her to suffer. What kind of life would she have anyway? We were a very busy family with little time to spare. It would not be fair to the other children to have a sibling who would be so demanding of time. One parent would need to stay home. Worse yet, one day, weeks, months, or a few years later, perhaps with little warning, Annie would die and all of the effort would be for nothing. This initial, logically driven view would soon change.

While reaching out to other families, we met many who had living children with trisomy 13. At first, I was overwhelmed by the limitations of the children. Up to this point in my life I had been completely untouched by disability of any kind. When I visited families who had children with disabilities, I could not relate to or bond with children who didn't talk or walk. Yet, the more we grew to know the families, the more we saw that there were good things about their lives together that we had never considered. Most of the disabled children were very happy. They progressed, but at their own pace. The parents were good people from all walks of life. Some had chosen not to terminate pregnancies despite prenatal diagnoses. Others were surprised by a diagnosis after their baby's birth. Both groups were equally devoted to and took great delight in their children. Disability was secondary to the importance of simply staying alive. Death was met with devastation, not relief.

We contemplated the threshold beneath which life was not worth living in respect of Annie and her place in our family. Our love for our other children did not correlate with their abilities, it was unconditional. We loved them simply because they were our children. It became clear to us that we could not let Annie die only because she had disabilities. We made the decision to provide her with medical care as we would for any other child, that is, to make decisions irrespective of her limitations. Eventually, with our decision made, we wholeheartedly willed Annie to survive with the same desperation as any other parent wants their child to live.

Annie was born full-term weighing seven pounds with Apgar scores of 8 and 9, "normal tone," and "strong suck on soother." Unlike many babies born with trisomy 13, Annie could see and hear. She was breathing well on her own and the CT scan showed none of the serious, common brain anomalies. We kept a bedside vigil with eyes glued to the saturation monitor because there was initial concern about the aortic valve. We existed on caffeine and chocolate bars, and like nomads, carried our belongings in a bag while sleeping on chairs and waiting room couches. Life is never as precious as it is when death is lurking in the shadows. We stood marveling at Annie for so long that our legs swelled and our ankles disappeared.

An ominous event occurred shortly after the profound relief of learning that no cardiac intervention was necessary. Late one night, when only my husband was present, a senior fellow came by to chat. The doctor wanted to know why we wanted a disabled child to live. My husband had been in a euphoric mood from the recent news that his daughter had a reasonably good prognosis, all things considered. He perceived the doctor's question to be insensitive and rude. He had no patience for this young doctor and what he was suggesting. His fatigue and hurt enable him to respond with little more than a retort, "she's my daughter and we love her!" This put a quick end to that line of discussion and it was never brought up again.

Annie developed hypoglycemia and had to stay in the hospital for six weeks. The gang back home sprang into action. Without a word to anyone, one of our daughters quit her summer job to manage things at home. Another daughter acted as liaison with the other trisomy families, sharing the news and relevant medical information. Our 12-year-old son took over care of the lawn.

Annie arrived home to a driveway full of encouraging chalk drawings and messages. "Annie kicks butt" was my favorite. The weeks that followed were intense. Everyday events like a walk on a starry night and a sudden sun shower were special with Annie in our arms. We wanted to share so much with her. Often I would just stare at her as she breathed. Annie knew she was loved. A kiss on the cheek would cause her to instantly lift her little head, arch her back, and take a look at her admirer. Despite the challenges and sacrifices, it was a privilege to love this little girl. Her first smile was pure magic.

Annie died before she was three months old. Her end was tragic. We took her back to the hospital with respiratory distress. Doctors didn't tell us the truth about what was happening or about the sedatives that they gave her against our wishes. We made critical decisions based on misinformation. Much later, we tried to get her records, so that we could know, finally, what really went on in her last hours. Alas, most of the final records are missing, so we'll never know the cause of Annie's death or whether treatment existed that might have been to her benefit. The hospital apologized, explaining that sometimes communication for complex children is not as clear as they would wish.

The gradual realization about how we were deceived and disenfranchised during Annie's last day of life was completely devastating to my family. Five years later, we continue to struggle with anger and hurt. We desperately needed a doctor to look past Annie's genetic label and predicted disabilities and acknowledge and understand that she was an individual, a very special girl whose family loved her and wanted her to live.

I don't regret our choices. Our baby's vulnerability and fragility touched us deep in our souls in a way we could never have imagined. The experience of sacrifice, suffering, and ultimately sorrow has tremendously enriched us personally and as a family.

The path we chose was rough and not well traveled. The journey was arduous yet deeply fulfilling. We encountered obstructions that may have prematurely ended it all. Our love was tested and prevailed and with that everlasting comfort, we carry on.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference—Robert Frost

Curr Probl Pediatr Adolesc Health Care, April 2011 115
About the Author
Barbara Farlow is an engineer who is also an active parent advocate and has written other narratives in the medical literature, mainly, Farlow B. Misgivings. Hastings Cent Rep 2009;39(5):19-21; Farlow B. The decision to accept disability: One family's perspective. Pediatr Child Health
2008;13(5):367.

The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.